Paying For Dementia Care – How to Plan Ahead

In 2015, the Alzheimer Disease International’s world report had estimated that 46.8 million ageing people worldwide were affected with dementia, Alzheimer’s disease, and other related memory disorders, with the majority of 22.9 million people affected residing in Asia.

The numbers were estimated to double every 20 years, with the number reaching 131.5 million by 2050. That is one new dementia case in every 3 seconds. In Malaysia, the last estimated number of dementia cases is projected to reach 261,000 in 2030 and 509, 000 in 2050. The estimated cost for dementia care is said to reach 705 million in USD.

Depending on the stage of these diseases, dementia individuals may require 24-hour supervision or care. With medical inflation being 10 – 15%, the cost for care is growing steeper. For the vast majority, family members – and sometimes friends – are the main providers of care is provided by friends. However, what happens when there isn’t enough money to pay for care?

As September 21st is World Alzheimer’s Day, it is prudent that we consider our potential encounter with dementia and make appropriate counter-measures. Hence, it is helpful to understand the different types of dementia, its varied stages and what to expect in order to make feasible financial plans if/when one faces dementia – be it for yourself or a loved one.

Dementia Types
Dementia is an umbrella term that describes a group of symptoms caused by many diseases associated with an on-going decline of the brain and its abilities. Dementia is an irreversible loss of cognitive capacity and memory, such that there is a decline in a person’s ability to function socially, physically and emotionally over time. While it usually appears in ages above 65, it should not be mistaken for simple forgetfulness due to old age as dementia is not a natural part of ageing.

As a brief overview, there are several types of dementia. However, the most common are listed below in descending order:

1. Alzheimer’s Disease (AD) – The most common type of dementia which looks at the accumulation and depositions of abnormal proteins) inside the brain cells that disrupts messages from the brain to body.

2. Vascular Dementia (VaD) – Also common, this dementia type is formed by the accumulated effects of multiple Cerebrovascular accident (CVA) on brain function. It is commonly associated with hypertension, atherosclerosis and inadequate blood flow to brain.

3. Dementia with Lewy Bodies (LBD) – This is a progressive type of dementia in which Lewy bodies (abnormal deposits of a protein called alpha-synuclein) build up in areas of the brain that regulate behaviour, cognition, and movement. LBD is usually difficult to distinguish from Alzheimer’s, VaD or Parkinson’s. Some symptoms of LBD include visual hallucinations and Parkinson-like symptoms such as a hunched posture, balance problems and rigid muscles.

4. Dementia associated with Parkinson’s Disease – This is a progressive disorder of the Central Nervous System (CNS) that affects the body’s motor functioning. Some people with Parkinson’s disease may develop dementia in later stages of the illness through the accumulation of Lewy Bodies.

The Stages Of Dementia
There are several stages that one should anticipate when preparing to create an outline of what is needed for one’s care in terms of finances, services and products. The list below will help you understand what to expect in the following stages:

Stage 1: The Early onset
During this stage, an individual can live a reasonably normal life. The dementia individual may experience short-term memory loss and he/she may misplace, forget and lose things from time to time. During this stage, dementia is not easily diagnosed.

Stage 2: Mild
The individual starts experiencing significant short-term memory and impairment of self-care tasks that require more complex thinking skills, including organisational skills such as managing finances – e.g. paying bills and managing financial assets. Another symptom to take note of are personality changes such as a sudden lack of motivation.

Stage 3: Moderate
Apart from prior symptoms, the individual will experience difficulty with basic Activities of Daily Living (ADL) routines that people tend do every day without needing assistance such as eating, bathing, dressing, toileting, transferring (walking) and continence. At this stage, the individual is extremely dependent and require close supervision.

Stage 4: Severe
By this stage, the individual requires constant 24-hour care in ADL routines. They are unable to use or understand words, recognize family member, find their way home. They are unable to walk.

Care & Estimated Costs
Estimating the amount of financial resources required for dementia care is difficult as the cost varies depending according to dependency and needs. However, it helps to know what are the resources available and their estimate cost to better gauge dementia care expenditure.

1. Day Care Centres
Adult Day Care Centres are a viable option to seek assistance that helps the dementia individual maintain their mental health via programmes and activities, while the working adult caregiver is away from the home.

Adult Day Care Centres can charge an estimate of RM100 per day. This works out to approximately RM24,000 annually if the individual attends day care for 20 days per month. However, it should be recognised that day care centres are not able to accommodate individuals in the later stages of the dementia.

2. Caregivers
Unlike a domestic worker, a professional caregiver is fully trained to handle matters regarding caregiving. Hiring a trained caregiver would typically cost between RM15 – RM25 an hour on a daily basis. This adds up to caregiving expenses ranging from RM2,000 to RM2,800 per month.

3. Nursing Homes
Almost all nursing homes are not equipped for those stricken with Alzheimer’s or dementia. Most would not charge additionally since dementia individuals do not require more care than other nursing home residents.

According to research conducted by Care Matters in 2014, the cost for staying in a nursing home could range from RM1,200 – RM2,600 a month for basic care services in a semi-private room, while a private room is about RM2,650 to RM3,500 a month. Bear in mind that sharing a room is not always an option for individuals with an aggressive nature due to dementia.

4. Daily Expenses, Consumables & Medical Check-Ups
Effective in 2017, the EPF has revised their figures regarding daily expenses an individual should be able to afford for 20 years. The EPF website stated the new minimum threshold provided is now RM950 per month. Furthermore, on-going medication and medical check-ups is at least RM235 per session with a Specialist Consultant. Additionally, expenditure on consumables such as adult diapers is at least RM400 per month.

Future Prospects
The potential of encountering dementia in our latter years is a real possibility as Alzheimer’s Disease and other types of dementia is said to be one of the most rapidly growing healthcare issue facing the healthcare industry. As ‘baby-boomers’ age and our population continues to live longer, care and supervision of those with a cognitive impairment is predicted to overwhelm our health care system and budget. While there is little in the way of early detection, it is known that dementia doesn’t occur overnight and there is a grace period for us to prepare for its possible occurrence.

Families and those who find themselves facing this predicament can do two things to help relieve the stress so often experienced through the caregiving years – EDUCATE yourselves on the resources for care and the progression of the disease, and PLAN AHEAD.

As a starting point, Malaysians could seek out the Alzheimer’s Disease Foundation of Malaysia (ADFM) at www.adfm.org.my to find educational resources, support groups, events and workshops that would help provide insight on the condition.